Monday, January 24, 2011

How's Miles?

Here’s something I’ve wanted everyone to know, but just haven’t known how to sugar coat it enough until now. The truth is that I don’t know a sugar sweet enough to cover up this bitter.

I hate being a Debbie Downer like a Dentist hates telling a patient she’s out of Novocain.

It’s just not me. I’m an eternal optimist. I see the glass half full. I see the world through rose-colored lenses. I’m happy-go-lucky. I have the joy of the Lord.

However, here’s the deal…Miles is not doing well. I know. Shocker right? The thing is that when I say he’s not doing well; I mean that he actually may not live much longer. Maybe he will live for years and years. Of course that’s a possibility. It just doesn’t look like that will be the outcome.

Wait! There’s more.

A couple of weeks after we came back from Ft. Worth I began the process of enrolling Miles in Hospice. I’ve been dreading everyone knowing that, yet I’ve also longed for everyone to know. I’ve felt very lonely in this decision. It’s not really something you post on Facebook. Brandi Wilson has just enrolled her 6 year old son in Hospice. It’s also not something I would tell someone when they ask me, “How’s Miles?” I’ve told a couple of people, but they had to hear the whole explanation behind it. I guess I’ve been fearful of what people would think about the situation if they didn’t hear our heart behind our decision.

The truth is that it’s been a heart wrenching month and a half for us, but for me especially. It’s different being the mama. Call me naive or faithful, but up until very recently I still held fast to the thought that God would heal Miles. I thought he would be restored. I thought God would give him a new brain or heal the one he has. I thought I would walk into Miles’s room one day to find him running around and messing with all the stuff in his room. I’ve longed for it, prayed for it, fasted for it, begged for it, sobbed for it, threw a fit for it, and nothing has worked. He’s just gotten sicker. He’s just gotten weaker. He’s lost more and more of his limited functions.

In December the things I saw him go through were horrifying. I still have flashes of different scenes that continue to flash through my mind. Projectile bleeding, panic in his eyes, intubation, blood transfusions, flying to the children’s hospital, blood clots, the meeting where Randy and I signed the Do Not Resuscitate form, watching the nurses take out Miles’s breathing tube and waiting to see if he would live or die, Rachel and I watching Miles turn terrible shades of purple as he fought to breathe. Believe me…the list goes on.

Most of the things I’ve dealt with and have seen I wouldn’t even want you to be able to understand how I feel. They’re too sad. They’re too consuming. Even more than that though, I don’t want Miles to have to go through anything like that again. He’s tired. There’s nothing else I can ask him to do. There’s not another hospital I want him to have to go to. I don’t want him to have to endure any longer. For a long time Miles had more good days than bad days. That’s not the case any more.

In the last month I’ve seen Miles almost die 3 times. One of those times was at home the day after I enrolled him in Hospice Care. He was having carbon monoxide poisoning from too much oxygen. Crazy.

Today a Hospice nurse had to come and check on him because he’s so sick. His lungs are filled with liquid, he’s having so much trouble breathing, he’s coughing up crazy junk, and when he opens his eyes they’re full of panic because he can’t get enough air. The nurse said he has pneumonia again. When she left she planned on calling the pediatrician to see what pain meds he should be on so he will be more comfortable. He could go into the hospital, but we’ve decided to keep him home and make sure he’s as comfortable as he can be.

I’m a wreck. I didn’t know if my son was going to be alive this morning when I laid him down to bed last night. I got up to check his stats at 2:00 in the morning. I’m holding him while I can in case he’s not around to hold much longer. I’m typing this in his room while I watch him breathe hard and while listening to the oxygen machine make it’s noise and the monitors make their beeping noise, and there’s nothing I can do to make all this stop. There’s not a pause button I can push while I home school Spencer or make jello treats for when the other kids come home from school or when I have to do laundry or when Randy wants time with his wife or when…

That’s probably why my hair is falling out in clumps and why I continue to cram stuff in my mouth that is covered with sugar, cheese or fermented grapes. That’s probably why I’m thinking about getting some iron on letters and putting “Don’t Ask Don’t Tell” on my shirt. If my husband asks me one more time “How are you doing?” I’m not sure what I will do, but it won’t be pretty.

If you’re still reading this I actually feel really bad for you at this point because if the tables were turned and I was you then I would have no idea what to say to me. The only thing that I could think of saying to bring comfort would be, “I’m so sorry you’re going through this. It’s so sad, and I want to be here for you if I can.” Then I would probably try to think of something funny to say and follow it up with, “I love you.” I would hope that I would take the time to say something to you. Maybe it wouldn’t be the right thing to say, but it would be something.

12 comments:

Oh Brandi I had no idea....just know that even all the way in Austin you have dear friends that love you all dearly and are praying for you all. I know that you know God has everything in his hands but it just doesn't seem like it sometimes. We love each and ever one of the Wilson family members dearly and we will keep covering you in prayers and I know that God is going to clothe you in peace and love!

My heart breaks for you and your family. You are the strongest family I know. You are in our thoughts and prayers, and if you ever need anything we are just down the street and will be there no matter the time of day.

As I read this and tears streamed down my face, I found myself thinking, "what do I say?" To which I have no answer. Three words just keep ringing in my heart and mind...I love you...I love you...I love you. Brandi - I love you!

I cannot even imagine what you are going through. All I know is that you probably understand more than most people the depth of the love that God had for us sending Christ to die for us. May the Lord use that for you to understand his love for you and how he longs so deeply for you to run into his arms for protection and comfort just as Miles eyes search for you in panic.

Wow, this really sucks. I know the last couple of reports you've given me haven't been good, but I guess you could call me an eternal optimist, too. I'm just used to not worrying about things, but this is way out of my experience level. It would be hard for me to be optimistic when my circumstances were staring me in the face daily. I'm so sorry you and your family are still having this struggle. I'm sorry that Miles is still having this struggle. I wanted it to be all fixed by now. It's been too long. I don't have any idea about God's timing, but it's just been too long. I don't want you or Miles to suffer anymore either, but I just can't even consider the alternative. I don't know. I just don't know. The truth is, if I could take your place, there's no way I would. That's the ugly truth. This has been a really hard road that you've had to travel and I don't envy you, but I've learned a lot from you and Randy about faith and perseverance and just doing life with a smile on your face when it sucks. I love you more than you can know and I feel like one of the most blessed people on the planet to be able to call you a friend. And I know Elliott feels the same way about Randy. We love you guys.

I never really told you this Brandi...but I thought for the time I was in Abilene that you were one of my role models. Seriously! I hope that I can find a woman someday that is full of optimism and life like you. Needless to say, following your blog and Mile's progress has been very disheartening. I am not a parent, I don't know what it is like to be in your shoes. But, I do know my mother and father have a little bit in that experience. I lost a baby brother when I was 5, and to this day I think about how life would be if he were alive. Yes, even at 4 up until now I still have scars. They didn't have to deal with all the things you and Randy had to deal with however, I know from that in any circumstance seeing your child in pain, hurting and suffering has to be the greatest pain for a parent. I will be praying for you and your family. It's hard to understand God's plans- but whatever in any circumstance the enemy is intending for evil, God will make it for good for those that trust and love him.

I love you and your family more than words can say. You are always on our hearts and in our prayers and I have nothing to say to "make things better." I am here if you need anything and can never even imagine what your circumstances would look like to my life. You are the godliest family I know and I am honored to have been such a part of it all. Let us know if you need anything. Even if you just want to go for a ride in the bug, let me know.

I'm really that you are going through this. I have your back. Your wish is my command. I will be your Westley to your Princess Buttercup "as you wish" ask us anything and we can do it. I'm a whiz at laundry and have two beautiful teens that can tackle dishes with all the grace and tenacity of an English bulldog!!

Brandi, This is the perfect opportunity to try and give you the words that I've wanted to share with you for a few weeks now.You've really been in my thought lately... So I here I go.I know we dont know eachother that well and we havent really had much opportunity to have conversations, however when we do I feel a deep connection to you... Maybe its because you are a girl Jesus set free and we have that in common.... But I know thats not it, its deeper than that.I feel like i am so very attracted to your courageous heart and the faith,joy and your contagious bubbly laughter that you bring to me and so many others.The few times I've been in your presence its only brought,hope,my own laughter & courage. You are totally and completely far from a debbie downer my beautiful friend!So scratch and destroy that thought. Total LIE!I just want you to know while your going through this difficult time... You've also been someone beutiful in the edge of my life. Sunday morning at church when I saw you and your family there a familar refreshing feeling came over me.There were tears in my eyes through almost the whole service. Nothing was wrong, I wasnt have an inner SOZO or anything life that, something just felt very refreshing and familar... I realized it reminded of the first few times my family and I came to Kingdom Life. How energetic and full, and free we felt KLF. The service was nearly over and the Lord reminded me your family used to set not to far behind us on the far left side....and once again it brought that refreshing familar feeling to my heart. So even if you just came for one Sunday...last Sunday,or whatever the reason you there. Thank you~! It brought a familar refreshing feeling... soemthing came to life and was resparked in me that morning! So Thank you!I think you so awesome Brandi Wilson! Know that what ever you need wether it be just to chat, coffee, MARAGRITA, prayer, laughter, girls night, just know you have friend in Clyde Texas and her name is Trisha Betz!Praying for peace and understanding and guidance and unity for your family!With all my LOVE! Mauh! Trisha

These comments are like water to my soul. I know that sounds cheesy, but it feels so true. I've felt so broken, and although the situation isn't any better today I feel loved, and somehow that makes everything better. Thank you all for your kind words. They mean so much to me! Love you all!